Welcome to the San Diego Chapter!
Thank you for visiting the San Diego Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
Join us for the 2023 Walk & Roll to Cure FSHD
Mark your calendar for Sunday, September 30th, 2023 for our Annual San Diego Walk & Roll to Cure FSHD at Harbor Island Park in San Diego, CA. Walk & Roll to Cure FSHD is an event that unites the FSHD community to raise awareness of FSHD and move us closer to our goal of disease-modifying treatments to families by 2025. Help us meet our fundraising goal of $50,000 this year and light the way to a cure!
Learn more about the 2023 Walk & Roll to Cure FSHD here!
Volunteer Spotlight: Amy Bekier
Hear from your local Chapter Director (and National Board Member!), Amy Bekier, about her journey with FSHD, how she got involved with the FSHD Society, and what she gets out of her work.
Volunteer Spotlight: Dana Simone-Kurtz
Next, meet your local Walk & Roll Coordinator, Dana Simone-Kurtz! She describes her relationship to the disease, her motivation, and advice for the newly diagnosed.
Upcoming Events
FSHD University – Physical Therapy for Shoulder Issues in Kids
Zoom Web Conference , United States1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Maaike Pelsma Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children... Read More »
International Walk & Roll Celebration with FSHD Radio
National Virtual Walk , United States10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our... Read More »
Young Professionals – Nutrition and FSHD
Zoom Virtual Meeting , United States11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will... Read More »
AMY BEKIER
Chapter Director
Amy Bekier obtained an M.S. in Education from Queens College, NY and had a career as an insurance agent and Chartered Life Underwriter. When FSH muscular dystrophy began affecting her and her family her motto became, “I can no longer sit and cope but must get active and hope”. After relocating to San Diego she joined the FSHD Society as a national Board member and Chapter Leader.
Amy is a passionate award winning artist who enjoys painting with soft pastels and oil. When she could no longer raise her right arm to paint, she taught herself to paint left handed. Until recently Amy played modified recreational golf and continues to be a member of the Bernardo Heights Country Club.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
